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The Reading Room

Book Review: Notes From the Sick Room

9 May, 17 | by amcfarlane

Notes from the Sick Room by Steve Finbow, London: Repeater Books, 2017, 343 pages, £8.99.

Reviewed by Alan Radley, Emeritus Professor of Social Psychology, Loughborough University

This is a book about sickness, more specifically about the illnesses of a number of well-known artists and philosophers. It is also about the illness history of the book’s author, Steve Finbow. He uses his own experiences of illness (and they are many and varied) to introduce the reader to the travails and writings of the individuals whose sickness he explores. The word ‘travails’ is apposite here as it suggests that illness can be, if not a life’s work, then a determining factor in how people live their lives, as well as rendering their experience meaningful through writing and other forms of art. Key to this is the idea that being trapped in a diseased body opens up the possibility of escape through self-examination, issuing in a productive outcome. To make this argument Finbow explores in detail the circumstances and reflections upon illness of several artists and writers. He introduces us to cancer in the life and death of people such as J G Ballard, Iain Banks, Christopher Hitchens and John Diamond. Finbow details the sufferings of Frida Kahlo after the bus crash that severely damaged her pelvis; the effects of being shot upon Andy Warhol and his art; the denials of illness that were part of Bruce Chatwin’s extensive travelling; and the descriptions of and insights into illness offered by writers such as Katharine Mansfield and Virginia Woolf.

How should one tackle a subject like sickness while providing detailed biographical detail about one’s own and others’ illness, at the same time weaving a complex argument drawing upon philosophers such as Nietzsche and Foucault? Finbow achieves this by treating the book as a virtual hospital – a clinical space – populated by celebrity patients and some celebrity doctors (e.g. Susan Sontag). The entries and exits from the various departments to which he escorts the reader are managed in part by introducing us (in detail) to his own medical history. These extend from a pain in the buttock to severe pancreatic necrosis and a spell in intensive care, all illuminated by details from his medical notes. In the case of the pain in the buttock, Finbow uses this as an approach to the question of whether cancer is alien to or part of the self and, in the case of the latter, how it might become so. Turning on the issue of denial, he argues that the denial of disease (“flight to sanity”) is not healthy, but that health tolerates disintegration and, by implication, transforms it through art and writing.

The idea that illness and the state of being sick can be the bases of productive art is expressed in a quote that Finbow provides, in which John Berger says of Frida Kahlo: “The capacity to feel pain is, her art laments, the first condition of being sentient. The sensitivity of her own mutilated body made her aware of the skin of everything alive – trees, fruit, water, birds, and, naturally, other women and men. And so, in painting her own image, as if on her skin, she speaks of the whole sentient world” (322). By drawing attention to this Finbow is agreeing with Nietzsche and Foucault that art is an act of freedom-making borne of suffering. This extends to the person’s life – including their art – so that what is rendered is expressive of a way of being rather than illness per se. It is perhaps for this reason that he objects to Susan Sontag’s attack on the use of metaphor as aestheticizing the “what should not be imagined”  – the abhorrent disease that is cancer. To this Finbow replies, “what nonsense”, and argues that when Sontag wrote about cancer in her book Illness as Metaphor (1978) she was, in effect, aestheticizing it.

The problem here is that there is a difference to be made between aesthetics and aestheticization. Aestheticizing, at its root, directs the viewer/reader to the artist/author rather than the object. An artwork is the product of a transformation that directs our attention to the ineffable; it is this that, in part, gives it aesthetic value. This is not always an easy line to draw, but it matters in this book because Finbow treats of both aesthetics and aestheticization in the course of his descriptions and discussions. By dramatising the artists and writers he discusses as either patients or doctors, Finbow risks muddling this distinction. So, for example, he writes: “Dr Sontag sits back in her chair, her fingers pyramided above the desk, the silver streak (poliosis) in her hair illuminated by the overhead fluorescent strip lights”. And later, “She closes the book, gets up, takes me by the crook of the arm and says authoritatively, ‘Let’s go to your office. I think we need to have a little chat’” (300). For this reader at least, these passages had the effect of displacing attention from the book’s argument about illness to the author’s interest in his subject matter, which at times I found unhelpful.

In terms of the book’s overall aim Finbow goes some way to demonstrating that illness improves the work of the artists considered, though he does not show exactly how art draws upon illness. Instead, the book remains a bricolage of ideas that coheres as a sort of image, a story of the necessity of ill health in our lives. Its overall message – drawn from Nietzsche – that life needs illness, is incomplete without it, is an important one. Health is not separate from illness, and a deeper understanding of health includes the idea that it can be strengthened by illness. And for that, and its historical and biographical detail, Notes from the Sick Room makes for a most useful and interesting read.

Alan Radley is the author of Works of Illness: Narrative, Picturing and the Social Response to Serious Disease. Ashby-de-la-Zouch: InkerMen Press, 2009.

Book Review: Deleuze and Baudrillard: From Cyberpunk to Biopunk

25 Apr, 17 | by amcfarlane

Deleuze and Baudrillard: From Cyberpunk to Biopunk by Sean McQueen, Edinburgh: Edinburgh University Press, 2016, 288 pages, £70.

Reviewed by Dr Anna McFarlane (University of Glasgow)

Sean McQueen’s first monograph ambitiously aims to create “a cognitive mapping of the transition from late capitalism to biocapitalism” (1) and to do this through tracing trends in science fiction from the cyberpunk movement of the 1980s and early 90s through to a subgenre only recently designated as ‘biopunk’. Following Fredric Jameson, a scholar known for his analysis of postmodernism and Marxism in late capitalism, McQueen argues that cyberpunk is the quintessential literature of late capitalism and therefore a fitting place to begin his analysis of this recent cultural movement from late capitalism to biocapitalism which, McQueen argues, “is the frontline of capitalism today, promising to enrich and prolong our lives, whilst threatening to extend capitalism’s capacity to command our hearts and minds” (1-2).  In McQueen’s schema this is a transition from the ‘control’ of late capitalism to the ‘contagion’ of a biocapitalism that he argues is an increasing threat to individuality and the autonomy of the body.

The book’s title belies its contents to some extent, given that the first half of the book does not focus on texts from cyberpunk’s ‘canon’, such as it is, but focuses on the ‘cyber-‘ aspect of cyberpunk to investigate texts that engage with the concept of control. Anthony Burgess’s A Clockwork Orange (1962) is not generally considered cyberpunk-proper in reviews of the genre, but its themes of control, and of the renegade individual fighting subjection by the state, certainly resonate with the work of figures in the cyberpunk canon such as William Gibson and Pat Cadigan. Another of McQueen’s chosen texts, JG Ballard’s novel Crash (1973), has been subject to debate about the extent to which it can be considered science fiction, let alone cyberpunk. Such deviations from the ostensible theme may be traces of the monograph’s origins as McQueen’s PhD thesis, but their reworking in this monograph is satisfying for those coming to the book for considerations of Deleuzian and Baudrillardian thought, who might consider the texts to which their philosophies are applied a secondary consideration. McQueen successfully cuts through the archaeology of decades of readings and misreadings of these two thinkers, often with a sharp word for scholars who come to the original philosophy with their own preconceptions, and hence leave it repeating unjustified or inconsistent critiques of these two thinkers. His own readings come across as fresh and new, perhaps because he works against a backdrop of scholars who have become too accustomed to invoking the names of Deleuze and Baudrillard without putting in the time to tackle their complex bodies of work first-hand.

The primary interest in the book for scholars of the medical humanities comes in the latter half, where McQueen turns to biopunk. This is a relatively new term in science fiction scholarship (following in the -punk traditions of cyberpunk, steampunk, and dieselpunk, to name but a few), but McQueen finds the term’s origins in classic science fiction, such as Mary Shelley’s Frankenstein (1818, commonly considered science fiction’s foundational text) and HG Wells’s The Island of Dr Moreau (1896). The first example of contemporary biopunk McQueen draws upon is Vincenzo Natali’s 2009 film Splice, in which a couple who work for a pharmaceutical company use DNA to create a hybrid creature.

The film draws on the tradition of Frankenstein to express fears of uncontrollable technological change, while also specifically critiquing a biocapitalism guided primarily by profit margins, rather than by philosophical or ethical considerations about the effects of its research.

McQueen’s readings of Deleuze and Baudrillard focus on some of these thinkers’ key concepts, how these have been relevant to cyberpunk and its investigation of ‘control’, and how they might function in contemporary debates about the ‘contagion’ that McQueen finds characteristic of biopunk. He contrasts Deleuze’s concept of the ‘body without organs’ with Slavoj Žižek’s ‘organs without a body’, both of which attempt to offer a representation of desire without the restrictions of hierarchy (to draw on only one valency discussed in the book). Žižek provides something of a bridge between Deleuze and Baudrillard here, as his Lacanian impulses are echoed in Baudrillard’s attempts to consider psychoanalysis, and how it might function in a society defined by the imaginary realm of consumption and consumer fetishism. Under biocapitalism, the consumption impulse could quickly move towards the point where the market’s freedom to use cells and discarded bodily tissue for profit is in tension with the long-held belief that it is immoral to profit from the cells of organs – as argued by Marlon Rachquel Moore in a recent article for BMJ Medical Humanities, “Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells”, which teases out the historical racial injustice that is now being relived, without hope of reparations, by the family of Henrietta Lacks whose ‘immortal’ cells continue to be the basis for untold profit in the biotechnology industry. The move from co-opting the labour of classes of the population under slavery, and later forms of capitalism, to co-opting the use-value of the body itself is the journey with which McQueen engages here as he moves from readings of Karl Čapek’s R.U.R. (Rossum’s Universal Robots) (1921), the science fiction play that brought the word ‘robot’ into English usage, and Eric Garcia’s The Repossession Mambo (2009, filmed in 2010 as Repo Men) which sees a biounderclass fitted out with artificial organs and forced to pay crippling interest rates or face having their organs repossessed – and dying in the process.

The electronic copy of this book, from which I reviewed, leaves something to be desired. Like many academic books, it uses endnotes which cannot be easily referenced as one reads in the electronic form, and the book’s use of abbreviations for the major works of Deleuze and Baudrillard exacerbate this problem as the reference list at the beginning of the book cannot be easily consulted. This makes for particular difficulties when quotes from the major texts are picked out as introductory to chapters and their sections, leaving the reader occasionally unsure as to which of the theorists is being quoted. However, the content of the book ultimately extends the case for considering biopunk as a unique and important subgenre of science fiction that, in turn, deals with the unique and important development of biocapitalism. McQueen’s readings of Baudrillard and Deleuze manage to scrape away some of the sedimented assumptions and misreadings of the past and offer exciting new ways to consider their work. His reference to both major and minor texts from both thinkers will introduce readers to insights they had not previously considered – again, especially relevant to students of the medical humanities might be Baudrillard’s comparison between cancer and capitalism in The Transparency of Evil (1990), the biopolitics of organ transplantation in Kazuo Ishiguro’s Never Let Me Go (2005), or Thierry Bardini’s account of subjectivity after bioengineering, Junkware, which McQueen turns to in his final chapter reading of Brandon Cronenberg’s Antiviral (2012).

As I pointed out above, McQueen’s book does not always stick to the limits laid out in his title, (for example when he reads texts that are not considered archetypically ‘cyberpunk’ under that rubric, or in the latter half of the monograph where Foucault’s thought is just as crucial to his argument as that of either Deleuze or Baudrillard), and his book should come with a warning for those who have never tackled Deleuze or Baudrillard before, given the slew of concepts that are not fully unpacked here for beginners. However, the book that emerges is cohesive and amounts to an often passionate argument for considering class consciousness in the era of bioengineering, biohacking, and biopolitics.

Book Review: The Mystery of Being Human

10 Mar, 17 | by cquigley

 

Raymond Tallis, The Mystery of Being Human: God, Freedom and the NHS. Notting Hill Editions, 2016.

 

Reviewed by Dr Sara Booth

 

This collection of essays – lucid, varied, compelling – is by retired academic geriatrician and neuroscientist Professor Raymond Tallis. A man who may truly be called a polymath, he is not the sort to skulk in a library and never publish anything until it is so perfectly honed that all the life is drained out of his thoughts. Tallis has written and published widely on subjects as diverse as post-structuralism (a critique), artificial intelligence, and the importance of philosophy (defending it against attacks from Stephen Hawking), including a book on Parmenides, a pre-socratic philosopher of whose written work only minute fragments survive.

There are six essays in this beautifully bound edition which, complete with page marker and linen cover, is a pleasure to handle as well as to read. The  subjects of this book, true to form, range widely, thus fulfilling the promise of its subtitle ‘God, Freedom and the NHS.’

In the preface, Tallis defends the brevity and compression of the essay, a form rare in the modern written media, except perhaps the London Review of Books or The New Yorker. He describes the essay as ‘a mind-portable form’, implying that it fits well with the interrupted nature of most people’s attention to their reading. Tallis believes that the essay is the best vehicle to express his well established humanism, self-defined as ‘secular humanism’, and his preferred philosophical stance on life, death and humanity since his teenage years.

Tallis defines this book as mainly a philosophical treatise, whilst he accepts, as I see it, that many will find his essay on the privatisation of the health service political. It is a most heartfelt essay, concerned with the tragic dismantling of the NHS by a ‘cynically corrupt political class.’ The book itself is dedicated to members of Stockport NHS Watch, with whom Tallis was moved to leave the library and to protest in the streets, and experience that he found difficult yet exhilarating.

In Lord Howe’s Wicked Dream, also the longest essay in the book, Tallis excoriates successive Secretaries of State for Health, saving his strongest contempt for Jeremy Hunt. In the short time since this book was published, there have been the strongest signals yet that the service is crumbling away under strains (ageing population with multi-morbidities and little attention to preventative health maintenance) that have been obvious albeit ignored for decades, and those heaped on the NHS by whatever the political equivalent of iatrogenic illness is: Hunt, for example, ramping up individuals’ expectations of what they should demand of the health service, demeaning those who work for it, reducing funding in real terms, and bringing in private companies to profit from the easy work. The Health Service is the most obvious example of the widening gulf between political rhetoric and lived reality, and illustrates the crude attempts to bring critics of (successive) government’s health policy into disrepute. Tallis’s essay is a powerful cri de coeur marred only, in my eyes, by the use of the term ‘swivel-eyed’ which always conjures up the clever, arrogant sixth former to me. It is now a hackneyed phrase which should be jettisoned. Otherwise, all too plainly, what Tallis has predicted is clearly coming to pass and his systematic destruction of the ‘alternative facts’ peddled by the government is cogent and impressive. It is wonderful that so many people give so many examples of still excellent, humane care in spite of the strains. Mid-Staffs remains a terrible example of what can happen when the wrong incentives narrow targets and ‘punishments’ are applied.

The current mayhem in the NHS and the political reactions on all sides impede any chance of looking constructively at how a ‘free at the point of service’ can be maintained. It is clear that we need also to convince people of the value and impact of looking after themselves by behaving differently and valuing what health they have, as well as looking at taxation. We also need someone in charge at the Department of Health who is interested enough in the Health service, and broad-minded enough to listen,  to understand what the work entails. Jeremy Hunt’s complete ignorance of what the reality of junior doctors’ lives are like, as well as his readiness to misuse statistics, has caused a huge mound of distrust to build between the Department of Health and the clinicians who work within the NHS.

Other essays in the book are more clearly philosophical. Tallis alerts us in the preface that a ‘philosophical novice’ might find his essays ‘demanding’. (Reader, I admit that I did). He has a deep, long-standing interest in time and the need to  ‘engage with physics and…rescue time from its jaws’. He feels that time is far too complicated to be left to those who reduce it to a set of numbers.

Unlike Professor Dawkins, Professor Tallis wants to engage, rather than belittle, those with religious or spiritual beliefs. In a wonderful essay, God and Eternity for Infidels, he concludes that that ‘the challenge of humanism is to retain a numinous sensibility without the continuing support of the idea of God or churches.’ In an equally enjoyable and thoughtful essay sparked by an everyday event On Being Thanked by a Paper Bag, Tallis considers the complexity of human consciousness.

In summary, this is a book that will provoke thought and new ideas in the reader – or at the very least a new way of seeing and thinking about many aspects of our lives. Reading it, you will also probably want to read more of what this thoughtful and humane thinker has to say.

Book Review – A Body of Work: An Anthology of Poetry and Medicine

9 Mar, 17 | by cquigley

Corinna Wagner and Andy Brown (Eds.) A Body of Work. An Anthology of Poetry and Medicine. London, Bloomsbury, 2016, 532 pages

Jack Coulehan, MD, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY 11794 USA

At first glance medicine and poetry seem like strange bedfellows. Yet, consider the fact that medicine has strong roots  in the world of art and symbols, and poetry can often be, as the editors of A Body of Work put it, “the deep music of bodies in pain.”  Because of its brevity and immediacy, poetry occupies a special place in the medical humanities movement, which seeks to explore issues of illness, suffering, and healing through the lenses of literature, history, philosophy, cultural studies, visual arts, and other humanities. In their introduction to A Body of Work, editors Corinna Wagner and Andy Brown ask rhetorically, “Poetry: What Is It Good For?” This brings to mind the famous lines from William Carlos Williams’ late poem “To a greeny asphodel,” “It is difficult to get the news from poems, / yet men die every day / for want of what is found there.”1 Perhaps poetry is like a vitamin, required for human flourishing, if not survival.

Several anthologies of poems about illness, disability, medicine, and healing have appeared in recent years. In addition, anthologies of poems written by doctors, nurses, and other clinicians are available. Does A Body of Work contribute anything  substantially new to this genre? The answer is a resounding Yes. The book’s subtitle, “An Anthology of Poetry and Medicine,” could be loosely applied to the earlier collections, but A Body of Work is the first to take the conjunction “and” quite seriously: not just an anthology of poems with the relevant subject matter, or poems written by medical practitioners, but rather an exploration of the relationship between poems and medical beliefs at the time of their writing.

Wagner and Brown situate poems in historical and cultural context by including excerpts from medical writings of the same period. These allow the reader to understand, at least to some extent, the mindset of the poet and his or her original audience.  Because in each major section, poems and medical texts are arranged chronologically, the reader may also observe how medical understanding of a poem’s subject matter evolved over several centuries.  This contextual approach creates a dialog between poetic and medical expression.

The Body of Work is divided into eight topical chapters: Body as Machine; Nerves, Mind and Brain; Consuming; Illness, Disease and Disability; Treatment; Hospitals, Practitioners and Professionals; Sex, Evolution, Genetics and Reproduction; and Aging and Dying. Within each section, poems are arranged chronologically, as are the excerpts from medical writings that follow. Consider the first chapter, which explores the metaphor of the body as machine. One of the first selections is by an anonymous 19th century poet who wrote:

Observe the wonderful machine,

View its connection with each part,

Thus furnish’d by the hand unseen,

How far surpassing human art! (p. 29)

 

In later poems this Enlightenment metaphor is variously affirmed, transformed, critiqued, and denied. For example, in the mid 19th century, Walt Whitman firmly rejected the mechanical man in “I Sing the Body Electric”: “And if the body were not the Soul, what is the Soul?” and “If anything is sacred, the human body is sacred…” (p. 33) In the early 20th century, D. H. Lawrence extolled the self-healing powers of body and soul, “I am not a mechanism, an assembly of various sections…” ( p.38) By the 21s century, poets were writing  about their bodies with considerable irony, as in Jean Sprackland’s “Supraventricular Tachycardia.” The body is distinctly flesh, but not a machine, “my excitable cells don’t wait for the messenger.” (p. 68)

Similarly, medical elections in this chapter range from Julian Offray de la Mettrie’s explicit Man a Machine (1749) to Varieties of Religious Experience (1902), in which William James argued that such medical materialism is a “too simple-minded system of thought.” (p. 81)

Chapter 2, “Nerves, Mind, and Brain,” the evolution of poetic and medical perspectives on mental and nervous disorders. Take, for example, melancholy. John Keats (1820) spoke in the third person when he described melancholy as a spirit that may fall “sudden from heaven like a weeping cloud” on helpless man. “His soul shall taste the sadness of her might / And be among her cloudy trophies hung.” (p. 88) A century later,  Edward Thomas, internalized melancholy, “What I desired, I knew not, But what e’er my choice / Vain in must be.” (p. 94) However, by the 21st century, poets have begun to assert their determination to fight and win at least small battles over depression, as Jane Kenyon wrote in “Having It Out With Melancholy.” Though “pharmaceutical wonders are at work,” she told her antagonist, “Unholy ghost, / you are certain to come again.” (p. 115) Medical writings from the 18th to early 20th century reflect a dramatic change in beliefs about the etiology of melancholy, from George Cheyne (1733), who claimed the illness was attributable to the damp climate, rich food, and sedentary lifestyle in England, to Sigmund Freud, who explained the disorder in purely psychodynamic terms.

The Body of Work contains countless such resonances between medicine and poetry that, from a medical humanities standpoint, give considerable added value to the more than 300 fine poems collected within.

However, the book does have one somewhat surprising deficit, given the editors’ avowed intentions. While contemporary poetry is numerically overrepresented (as is appropriate), the most recent medical writings date from 1919, aside from a brief excerpt from William Carlos Williams’ Autobiography (1948). Thus, most of the poems reflect dramatic developments in the understanding of illness that occurred in the last hundred years, while corresponding medical pieces are absent. Certainly William Röentgen’s “On a New Kind of Rays” (1905) and Joseph Lister’s “Illustrations of the Antiseptic Method of Treatment in Surgery” (1867) led to significant advances in the world of medicine, but haven’t similar developments in mid to late 20th century also radically influenced poetry about illness and healing?

Despite this caution, I strongly recommend A Body of Work to anyone interested in poetry about illness, or poetry and medicine, especially students of the health care professions and their teachers.

Book Review: Illness as Many Narratives

7 Mar, 17 | by cquigley

 

Illness as Many Narratives: Arts, Medicine and Culture

by Stella Bolaki. Published by Edinburgh University Press, 2016.

 

Reviewed by Birgit Bunzel Linder

 

Stella Bolaki’s Illness as Many Narratives introduces several instructive case studies that squarely fit into the critical mode of the second wave of the medical humanities. Drawing on diverse arts and media such as photography, film, animation, performance and artist’s books, the author argues for more extensive cross-fertilisation between contemporary arts and media practices and the medical humanities. Bolaki’s various interpretive approaches are offered as tools that aide in strengthening the dialogue between medicine and broader culture.

The concept of the ‘critical’ in the medical humanities has recently been defined as the ‘embrace of new historical, cultural and political perspectives, as well as different questions and methodologies.’ (Whitehead & Woods, 3) It is guided by the question how one might ‘productively rethink the notions of collaboration and interdisciplinarity’. (3) It is exactly this quest for collaboration and interdisciplinarity Bolaki successfully models in her book, thus adding new perspectives and theoretical tools from the arts and media to the illness narratives of the first wave and to the alliance with the social sciences of the second wave.

In the Introduction, Bolaki broadens the scope of narrative to include forms of art and the media that are related to communicating. These ‘emergent narratives’ allow in various forms and structures to tell of the messiness, complexity, plurality, and diversity of illness experiences while at the same time summoning ethical perspectives toward the nexus between individual socio-cultural and medical predicaments. This leads to the core of her argument, namely that ‘[i]t is the active fashioning of tools, this constructive process that draws on different disciplines and perspectives, that I argue should be at the heart of the critical medical humanities.’ (12) Ideally, this set of critical tools proliferates mutual interplays between the arts/media and the medical humanities, a ‘critical interloping’ (13) that decenters the literary narrative form in favor of collaborative and interdisciplinary representations.

In the chapters that follow, Bolaki introduces a variety of emergent illness narratives. She begins with two very dissimilar photographic representations of breast cancer, The Picture of Health? (1985) by Jo Spence, and Self Portrait in a Single Breasted Suit With Hare (2001) by Sam Taylor-Wood. The two photographic forms of exposure—one revealing and one concealing—are remarkable examples of how word and image together mediate the illness experience. Verbal aides, such as captions, interpretations, photo essays, other fragmented texts, and the integration of various cultural theories provide intimate and authentic witnessing of personalized experiences that influence public perceptions of breast cancer differently than either ways of communicating could do separately.

Martha Hall’s artist’s books chronicle her experience with breast cancer and her receding life. Artist’s books are primarily anti-establishment works of conceptual art that use and deconstruct the form of the book, making art accessible to the wider community. Hall uses paper sculpturing, unusual binding structures, and various crafts to translate her illness experience into viewable and touchable objects that draw the ‘reader’ into a participatory experience. Artist’s books have an advantage over literary texts because the non-diagnostic participatory touch establishes a clear association between ill body and illness narrative and invites individualized ethical considerations.

The Chicano performance artist Guillermo Gómez-Peña challenges cultural perceptions of the ill body and represents his own experience with liver and infectious disease. His performances connect the individual experience with and within society, and, as a pedagogical strategy, widens the gaze from the isolated ill body to its network of (cross)-cultural practices. Gómez-Peña performs two perspectives: the culture-bound medical view of the body and the body’s view of culture-bound medicine.

Nick’s Film/Lightning over Water (1979) by Wim Wenders records the last few weeks of Wenders’ friend Nicholas Ray who is dying of lung cancer. The film portrays the messiness, helplessness, and failures that arise from exploiting someone’s dying experience artistically. The film form makes visible the very unspeakability of death, and chronicles a shared experience that effects an immediacy of experience and poses unanswered questions. Perhaps the most therapeutic aspect of this palliative project to all involved is that in chronicling his own dying, Nick’s legacy survives through the film.

The experimental and autobiographical theater “Well” (2004) by Lisa Kron is a relational narrative of Ann Kron and her mother regarding their different therapeutic approaches to chronic fatigue syndrome and allergies. Through a radical change in lifestyle, the daughter’s story leads to healing, while the mother opts for medical treatment, yet cannot escape her illness. The play prepares for a realistic clinical uncertainty that is not just determined by medical limitations but also by different individual responses to illnesses and treatments.

Finally, a set of six collaborative online animation films called Animated Minds (2003) each address a mental disorder. While he patient’s voice-over narrates his or her experience, there is a collaborative effort in animation, coloring, and music. This form of collaborative artistic expression is particularly striking, and much of what remains unspeakable in the written word becomes speakable in animation and therefore counteracts isolation and stigma. Fish on a Hook impressed me the most. The very respectful, empathic yet matter-of-fact voice-over draws the audience into an alternative world (or what Bolaki calls ‘alternative knowledges’) of a mental disorder (agoraphobia and panic attacks) that might otherwise remain inexplicable. If the strength of Wenders’ film lies in its immediacy of experience, the relative anonymities in Animated Minds (and in particular Fish on a Hook) succeeds in a kind of distancing that allows critical and unencumbered engagement. It enables different dialogues about lived experiences that also include fear, resistance, loss, helplessness and the social context that define these.

Bolaki’s examples reveal several commonalities. All of them display a complexity and authenticity of experience, and result in productive learning from disorderliness and failures of representation that challenge previous discourses of mastery. In these examples, we can see what we already know but often ignore: that no patient’s illness experience happens in a vacuum, or, perhaps even more importantly, within a medical bubble. The deconstruction of art forms through messiness and fragmentation are a ‘body speak’: they mirror the ill body’s deconstruction and disintegration. Moreover, the artistic forms are of great importance because they are related to questions of ethics and politics that explore the many ‘metastasised’ conflicts around illness. The communicative acts are tightly bound to the question of ‘how to live (or die)’ and especially how to be perceived rather than merely how to be healed.

Although it has become a truism that a patient is more than his/her body or illness, each project Bolaki selected for her book, strongly foregrounds the mind and creativity of the artist and presents the patient (perhaps for some uncomfortably so) as a complex, lively, and creative being. Although the artists and performers deal with death and disorders, they leave a legacy that lives on. Combined with collaboration and public access, the suffering artist-patients nevertheless generate projects that are giving, instructive, tangible, and inspirational, and succeed in blending artful expression and poignant meaning. Perhaps herein also lies the difference between the first wave of medical humanities and the second wave: the former engages in listening and proxy-experiences, while the latter engages in participation and witnessing. This seems to be a logical next step.

What then about those who remain silent, those who don’t want to tell their stories, or those who cannot identify with the narratives already told? To re-phrase Tolstoy, ‘All healthy people are alike; each ill person is ill in his or her own way.’ How can the medical humanities represent the silence that is probably inhabited by the clear majority of those suffering from illnesses? Bolaki’s Illness as Many Narratives importantly reminds us that the content of the narratives might not represent everyone’s experience, but that the need to communicate one’s suffering is universal.

A very minor criticism of the book is that Bolaki assumes familiarity with the chosen materials. Her analyses are comprehensive and convincing, but it would have been good to have a general introduction to each project under discussion. I also felt that her diligent defense of emergent narratives might be preaching to the converted in literary circles, especially since she clearly and convincingly works out what her emergent narratives can do better than other word-based narratives: they solicit dialogues and shape perceptions in a much more public and political way.

Throughout her book, Bolaki underscores—by way of aesthetic, ethical, pedagogical political, and collaborative methods (tools)—the notion of narrative as telling in many forms, forms that favour expressive and evocative representations rather than linear story-telling. The photography, artists’ books, performance art, film, theatre and animation Bolaki introduces in her book reject the ‘cultural narrative of triumph’ (64) and invite instead critical interloping and inter-disciplinary dialogue. Bolaki’s Illness as Many Narratives is an intelligent and illuminating contribution to the field. A short review like this can in no way do justice to the book’s sagacity and importance.

 

Whitehead, A., and A.Woods, eds.  Atkinson, S., Macnaughton, J., and J Richrds, assoc. eds. (2016). The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

 

Book Review: True Tales of Organisational Life

6 Feb, 17 | by cquigley

 

True Tales of Organisational Life

Barbara-Anne Wren

Karnac Books Ltd, 2016

ISBN-13: 978-1-78220-189-2

 

Reviewed by Dr Andrew Schuman

 

It’s stories, the psychologist Barbara-Anne Wren reminds us, “that will hold us when nothing else can”. They are humankind’s most effective way of making sense of the world – of organising and giving “a shape to experience”.

The organisation in question, both in the title and at the heart of the book, is the National Health Service (NHS): a gargantuan body employing around two million people. The individuals, working within the service in these straitened times, are facing unprecedented challenges. Relentless waves of financial cuts, along with breathtakingly costly systems of regulation and inspection, have left a workforce more disillusioned and more demoralised than ever before.

Wren’s work as a psychologist and organisational consultant, in a busy London teaching hospital over the past seven years, has been ground-breaking. Rather than seeking the impossible, of  “banishing” emotion and distress at an individual level, her remit has been to “manage meaning and complexity, understand emotional life at both an organisational and individual level, and create spaces in which the unique challenges of healthcare work could be observed and understood.” Some remit.

The strength of Wren’s book lies in her first-hand account of setting up this therapeutic space – in the form of Schwartz Rounds. Originating in America, they consist of a monthly meeting of health professionals, in a forum that is non-hierarchical and deliberately organisation-wide. Their primary focus is on the human dimensions of providing care. Rather than chasing action-points and outcomes, the emphasis in these meetings is on quiet reflection and stillness – storytelling without a means or an end, where “rational and emotional experience have equal permission to emerge”.

At their core is the work of Kenneth Schwartz, a US lawyer, who died of lung cancer in his forties. His own story of diagnosis and treatment was, he writes, “punctuated by moments of exquisite compassion”, [that] “made the unbearable bearable”.  The article he wrote, shortly before he died, serves as a rallying-call:

I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rule-books, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them…

Our response to his plea must be to support and enable those working in the front-line of the health service – and to encourage and inspire a greater emotional engagement with our patients. As Wren reminds us, psychology’s modus operandi is in “relationship”: “it is dynamic… It works because it moves.”

The protected time and head space of the Schwartz Round give participants permission to open up about the very things that really move them – “what they were proud of, exhausted from”, but also “what saddened and puzzled, infuriated and frightened, humbled and inspired them.”

Two-thirds of the way through the book, we get to its raison d’etre: a collection of seven stories, garnered from the many Schwartz Rounds that Wren has facilitated. These “true tales” (of the title) illustrate the limitless ways in which a particular story is able to “move”, in all senses of the word. They tell a tale, but they show us a greater truth: that stories “will hold us when nothing else can”. With their beginnings, middles and ends, they can bring order and sense – and “sustain us”. Some of the stories arise from clinical issues, others from tensions that can occur between our personal and professional lives; still more concern conflicts at an organisational level.

One of them concerns a “macho” transplant surgeon, who needed to travel to another hospital in order to harvest an organ, before returning gung-ho, aware only of “the happy anticipation of the expectant, hopeful patient” whose life he would be saving – and “ready to demonstrate his skill and authority”. As the successful retrieval surgery came to an end, and the surgical drapes were removed, there was a rustle of paper below the body of the child donating the organs – and a teddy bear tumbled to the floor. The teddy bear was the very first thing the child had been given when he was born; the paper some pages on which family members had imprinted their hands, so that the child would die “in their arms”.

As soon as this was explained to the transplant surgeon, “a ring of steel around his emotions was broken”. By the time of the Schwartz round, the surgeon succeeded (only just) in “gather[ing] up all his energy”, and recounted his experience – including the detail of the teddy bear.

Reading this stopped me short. It also brought to mind the words of the American writer, Maya Angelou: “There is no greater agony than bearing an untold story inside you”. The surgeon’s burden had been made lighter by the telling of his tale, while those listening, bearers of this confessional, could respond only with silence.

Wren unpacks each of the stories she gives us – in this particular case, reflecting on the challenge for clinicians of balancing feelings of sadness and grief with “the business of living”. We need to know, in order to function for the good of all of our patients, when to block each of them out. Both feelings are, of course, essential.

Another tale looks at the case of an abusive patient – but from the perspective of the staff looking after her. As Wren points out, the focus of the Schwartz Round is more on effects than causes: here, the focus was on the impact of the abuse on the individual staff members, and the “reality of what they have to withstand”. Faced with this situation, we can sometimes summon up compassion and creativity; at other times, we’re all too aware of the limits of our compassion. But Wren gets the participants to “question the balance between what is being required of them, what they have left to give, and the containment and support they are being offered” – while appreciating, and exploring, the ways within the group of dealing with such abuse.

The book is not without faults. The editing could have been a little tighter. At times, Wren’s prose tends towards the mystical. Elsewhere, her generalisations can seem weak. “Everyone”, she tells us, “wants to be a psychologist, or is one, or knows one”. Her statement, that patients in hospital “[a]ll have families who want them back” seems, sadly, a tall tale.

But True Tales is good on the practicalities of voicing disharmony in the workplace, and of seeking ways to resolve these conflicts through the timeless alchemy of stories and story telling. “Ever since we were little, the stories have kept the darkness at bay. That and each other will get us through.”

 

Dr Andrew Schuman

Dr Kenyon & Partners,

19 Beaumont St., Oxford, OX1 2NA

 

andrewschuman@doctors.org.uk

 

 

Book Review: This Way Madness Lies.

1 Feb, 17 | by cquigley

 

This Way Madness Lies. Madness and Beyond. By Mike Jay. London: Thames and Hudson, 2016.

Reviewed by Dr Allan Beveridge

 

Published to accompany the recent Wellcome Collection Exhibition, ‘Bedlam: the asylum and beyond’, this book is packed with over 600 photographs and illustrations drawn from the archives of institutions in Europe and America, as well as with art work by patients from a wide range of different eras and locations. The book is, itself, an ‘object’ and deserving of close study. At first sight, it seems a marvellous exhibit. Crammed with images from a bewildering variety of sources, it entices the viewer and, perhaps intentionally, disorients them with the clash of visual material. There are countless black and white photographs of asylum inmates, architectural plans of institutions, portrayals of psychiatric treatments such as the strait-jacket, lobotomy and malarial therapy, magazine advertisements for medication, cinema posters of asylum horror movies, anti-psychiatry placards, and a selection of art by well-known artists such as Hieronymus Bosch and Theodore Gericault, as well as celebrated patient-artists like Richard Dadd, Louis Wain and Adolf Wolfli. The organisers of the project have been able to mine a very rich seam of archival material and, possibly, they have been loath to exclude any of it from the book. The result is that while there are numerous large colour reproductions, there are also too many pages where multiple images have been crammed onto the one page. For example, page 16 has fifteen small black and white images of scenes from the story of Bethlem Hospital. The pictures are simply too minute and poorly defined to be properly viewed and appreciated. This is the fate of many other images which are bundled together onto the one page. This is frustrating because from what one can make out of the pictures, they are full of historical and aesthetic interest.

A more serious concern is that of the ethical questions raised by showing photographs and images of patients, often in distressed and degrading conditions. Should such images be shown? The men and women featured were not able to give consent. Should their only appearance on the historical record be that of their time as an asylum inmate with no reference to other aspects of their life such as, for example, being in a relationship, being a parent, or having an occupation? If the photographs are displayed, should the patients be identified by name or should they remain anonymous? Does anonymity serve to protect the identity of the patient or to make them even more of an ‘object’, lacking individuality?  Are some images too demeaning and disrespectful to the subject to be exhibited? These are difficult ethical questions which have provoked discussion amongst fine art commentators, historians and psychiatrists: they are no easy answers. Nowhere in the book is there a discussion of these vexed issues or even an acknowledgment that the presentation of this material may be problematic. Further, these images and photographs of patients were created for a variety of purposes. Some clinicians, such Sir Alexander Morison wanted to delineate what he saw as the particular ‘physiognomy’ of different types of mental conditions and paid professional artists to accompany him to asylums to make sketches of selected inmates. Charcot sought to capture the apparently spontaneous ‘hysterical’ behaviour of his patients at the Salpetriere, but research suggests patients adopted the poses expected of them. Other photographs of patients participating in the activities of the asylum were meant to advertise the benefits of the institution. Again, apart from the accompanying captions, there is little discussion of this or the particular context in which each image was commissioned.

One is reminded of the well-known episode in the history of Bethlem Hospital, or ‘Bedlam’ as it came to be known, where the general public were allowed to visit the asylum to view the inmates. Some saw it as educational, whilst others saw it as entertainment and a source of titillation. This practice was eventually stopped in 1770, but one is left with the uneasy feeling that this book in some ways represents a modern version of visiting Bedlam. At least the 18th century inmates were able to engage with the public and give an account of themselves. Here the patients, frozen in images and photographs – ‘mute inglorious’ –  have no means of putting forward their side of the story.

The writer, Mike Jay provides the text of the book. Generally he provides a balanced and readable account of this contentious area. Neither telling a tale of benign progress, nor, contrastingly, a catalogue of the disasters inflicted on the mentally ill by the supposedly-evil empire of psychiatry, Jay prefers to see the history of psychiatry in terms of a pendulum swinging between psychological and physical approaches to madness, and between institutional and community responses. He is thus able to see the good and bad in different periods. He is less inclined than Andrew Scull, whose recent volume, Madness in Civilisation he cites approvingly, to perceive the undoubted abuses and wrong-turnings of psychiatry in terms of wicked and self-serving clinicians, and more as a result of their misguided intentions and the sheer complexity of mental illness.

The book is divided into sections: the 18th century madhouse; the 19th century lunatic asylum; the 20th century mental hospital; and ‘beyond the asylum’. At the centre of the narrative is the story of Bethlem and its founding in the thirteenth century, which Jay goes on to trace through its evolution as a madhouse, an asylum and, finally, a modern day hospital. As Jay is well aware, Bedlam, or rather the mythology of Bedlam, has long been part of our folk-lore and culture. John Webster, Jonathan Swift and William Hogarth all depicted the institution. Jay is good on cultural representations of Bethlem and points out that, from an early stage, these portrayals bore little resemblance to the actual hospital. He mentions famous Bethlem residents such as James Tilly Matthews who drew up a visionary architectural plan for the new Bethlem which uncannily anticipated the building that was eventually created. He mentions, too, Richard Dadd, the parricide, whose strange and highly detailed paintings were, arguably, more striking than the works he created before his incarceration.

Jay also takes in developments in the rest of Britain, as well as in Europe and America. He charts the failure of the 19th century asylum which became over-crowded with incurable patients, the development in the 20th century of the mental hospital with its hope that physical treatments would return patients to their homes, and community approaches in our own time which have been ham-strung by a lack of funding. He examines the rise of pharmacology and alternative therapies. As in previous times, a variety of therapies crowd the market-place.  Jay places a particular emphasis on the story of Geel, the Belgian town where for many centuries patients have lived with local families and worked in the community. Jay sees this example as the way forward in our post asylum world.

A recurring trope in Jay’s account of the history of madness is that the world is one vast Bedlam.  He quotes the campaigner, Thomas Tryon observing in 1689: ‘The world has become a great Bedlam, where those who are more mad lock up those who are less’. (p. 52) The 19th century alienist, Dr John Conolly greatly extended the list of those he felt would benefit from asylum care. As Jay wryly observes: ‘The logic of the perfect asylum, taken to its logical conclusion, was that the entire world should become one.’ (p. 120) At the beginning of the 20th century, Jay argues,  madness seemed to have escaped the asylum and taken root in the culture at large as an entire generation was slaughtered in the insanity of the First World War. He concludes, somewhat provocatively:  ‘In the wake of the asylum, the world has become a great Bedlam’. (p. 218) Whether or not one agrees with this, it does serve to emphasise that the difference between sanity and insanity is perhaps not as marked as we would like to imagine.

The book, then, is a mixed achievement. The images veer between the stunning and the indistinct, and there is a curious lack of an ethical context to them. However, Mike Jay’s text is, in the main, even-handed, and for those new to the field, an accessible and well-written introduction to the history of psychiatry and madness.

 

Dr Allan Beveridge

Book Review: Thinking in Cases

23 Jan, 17 | by cquigley

 

Thinking in Cases

by John Forrester. Published by Polity, 2016.

Reviewed by Dr Neil Vickers

 

John Forrester, who died in 2015, was the most original historian of the human sciences of his generation. His great love was the history of psychoanalysis – he was for 10 years the editor of the journal History and Psychoanalysis – and he published no fewer than 4 major books in that field, including the classic Freud’s Women (which he wrote with his wife, Lisa Appignanesi).

Thinking in Cases is the first of two books to be published posthumously, the second being the monumental Freud in Cambridge (co-authored with Laura Cameron), due out later this year. It comprises six essays written over the last two decades on what he memorably termed ‘case-based reasoning’. Forrester, along with many historians of science, believed that case-based reasoning had embedded itself in a variety of disciplines, in ways that experts were often reluctant to acknowledge. It might be thought that in the era of evidence-based medicine, medical education no longer needs the case. Yet, as Forrester argues in his classic essay, ‘If P, Then What? Thinking in Cases’ (1996), novice practitioners learn their science by absorbing a handful of standard experiments from scientific textbooks. These case studies – for that is what they are – serve not only to make the underlying principles more memorable, they also provide something like a shared professional memory.

Much of Forrester’s thinking on case-based reasoning was informed by his decades-long engagement with the work of Thomas Kuhn, with whom he studied in the early 1970s. The most brilliant essay in the book (‘On Kuhn’s Case’) treats the evolution of Kuhn’s thought as a case study in how the philosophy of science actually works at an individual level. Kuhn, it turns out, came from a family that was steeped in psychoanalysis. His grandmother had analysis in Cincinnati with Alfred Adler, sometime in the 1910s or early 1920s. His mother edited some of Karen Horney’s works. And most important of all, he twice underwent psychoanalysis himself, first (briefly) as a child, and again as an adult, between 1946 and 1948. The end of this second analysis coincided with two great changes in Kuhn’s life. He was admitted into the Society of Fellows at Harvard which enabled him to abandon his career as a theoretical physicist and to become a historian of science instead. And he embarked on a marriage that lasted 30 years. He decided to abandon physics for history when he read Aristotle’s Physics. At first he was baffled by the great man’s obtuseness. How could someone who had written so penetratingly on so many other subjects have got the laws of the physics so wrong? But one day it dawned on him that Aristotle was investing concepts like ‘motion’ with completely different meanings from the Newtonian ones he had learned as a boy, and that, once he had made allowances for this altered usage, Aristotle’s physics not only made sense but was far in advance of its time. This Gestalt shift in his own thinking was the first instance of the famous ‘paradigm shift’ which became the master idea of Kuhn’s book The Structure of Scientific Revolutions (1962). Forrester leaves us in no doubt that it was the result of analysis. In an interview published in 2000, Kuhn stated that it was while he was in analysis that he learned ‘to climb inside people’s heads’. He recognised that this ability was central to his work as a historian of science and that for this reason he owed psychoanalysis ‘a tremendous debt’, even though he didn’t much enjoy being a patient. The Aristotle epiphany occurred while he was in analysis. Forrester points out that Kuhn’s method was both individualistic and psychologistic. Kuhn called himself an internalist historian of science because of his overriding preoccupation with the problems his subjects were trying to solve. The historical contexts in which they tried to solve them were a secondary matter. But he was an internalist in the more informal sense that he worked by climbing into other people’s heads. In the same interview Kuhn recalled feeling he could ‘read texts, get inside the heads of the people who wrote them, better than anybody in the world’. These other people were encountered as auxiliary selves – extensions of himself. Forrester quotes several anecdotes Kuhn told about himself in which new selves – famous scientists all – would arise almost in the manner of out-of-body experiences.

The other highlights of the book for me were two pieces on the LA analyst, Robert J. Stoller (1924-99). The first puts forward an extended speculation concerning Stoller’s analysis of a woman on whom he conferred the pseudonym Belle. Belle is the protagonist of one of Stoller’s best books, Sexual Excitement: The Dynamics of Erotic Life (1986). The turning-point in Belle’s analysis occurred when she described a daydream she’d nurtured from childhood in which a figure called The Director instructed her to humiliate herself sexually before a group of adults (and sometimes animals). Stoller was bothered by what he took to be his patient’s seductive behaviour towards him. It was only in retrospect he realised she was pressing him into the role of the Director. (Belle’s mother was a famous Hollywood actress who took up with a number of Directors. The injunction to perform was everywhere in family life.) Forrester suggests it was from Belle that Stoller drew his controversial theory that sexual excitement ultimately depended on hostility. He suggests that the book detailing her case history, written years after her treatment ended, was an attempt to model a more benign form of watchfulness for her. Stoller consulted Belle over every draft of the book and gave her carte blanche to alter anything she didn’t agree with. It was sobering for them both to discover that they had very different views of what had been valuable in their work together. Forrester suggests that the writing of the book was the decisive part of the treatment for through it he showed her that he didn’t need to be entertained by her. ‘If he had not published his book,’ he writes, ‘her analysis would have been a failure.’

The second Stoller-related chapter (unpublished until now) is a paper on ‘Agnes’, one of the world’s first male-to-female transsexuals. Agnes’s case was first described in Harold Garfinkel’s Studies in Ethnomethodology (1967) but Garfinkel took Stoller on as a co-author as he was one of Agnes’s psychiatrists. Agnes claimed to have been born intersexed and, starting in the late 1950s, went through an arduous vetting procedure lasting many years in order to obtain surgical gender reassignment. Many years later she told Stoller that from the age of 12 she had in fact taken her mother’s hormone replacement medication which resulted in her acquiring female secondary sex characteristics. Garfinkel the sociologist thought that Agnes’s attempts to pass as female shed light on what maleness and femaleness were, as socially-credited qualities summoned up into being every moment of every day. Her deception about her history was just another instance of what she had to do to ‘pass’. Stoller on the other hand originated the concept of core gender identity on the basis of his treatment of Agnes. He met Agnes’s mother and discovered that she had regarded herself as male from the age of eight and that she had passed her own ambivalence about her gender identity on to her adored son, whose transformation into a woman she supported wholeheartedly.

Thinking in Cases is an ideal introduction to Forrester’s thought, containing some of his most important papers. He combined a scientist’s delight in devising new methods to understand recondite things with an exceptionally acute sense of the role of contingency in intellectual discovery. These strengths were central to his style of reasoning and, as these pages testify, made him one of a kind. Everyone with an interest in the medical case history and its wider ramifications should read this book.

Book Review: The Edinburgh Companion to the Critical Medical Humanities

17 Jan, 17 | by cquigley

9781474400046 

The Edinburgh Companion to the Critical Medical Humanities

edited by Anne Whitehead and Angela Woods (general editors) with Sarah Atkinson, Jane Macnaughton and Jennifer Richards (associate editors). Published by Edinburgh University Press, 2016.

Reviewed by Josie Billington, University of Liverpool

 

‘Critical medical humanities’, say the editors of this volume, marks a ‘second wave’ in the field. First-wave medical humanities was characterized by an emphasis on ethics, education (championing the arts in particular), and the subjective experience of illness, diagnosis and treatment. The second wave, by contrast, ‘energised’ by the social sciences, turns to interrogate the ‘primal scene’ of ‘mainstream’ medical humanities – the clinical encounter between doctor and patient, more specifically the diagnosis of cancer. Seeking a ‘thicker’ understanding, its focus is not ‘the lived body of the patient qua patient’ but the political, social and cultural contexts and factors (race, class, gender, sexuality, debility) which underpin or influence the illness experience. In thus self-consciously positioning itself as a foundational text of the new wave, the Companion, as we shall see, is opposed to the old binaries of patient/doctor, illness/disease, medicine/humanities within an orientation which saw the medical humanities as a ‘benign helpmeet’ to biomedicine. But this text is not seeking, therefore, to ‘create new binaries’ (between research and education, practice and theory). Rather, it stresses the ‘mobility’ and ‘fluidity’ of critical medical humanities offering ‘an encapsulation of the field’s current momentum’ as an area of inquiry that is ‘highly interdisciplinary, rapidly expanding and increasingly globalised’.

The book achieves this latter mission admirably. Formally organized into four thematic strands – ‘Evidence and Experiment’, ‘The Body and the Senses’, ‘Mind, Imagination, Affect’, ‘Health, Care, Citizens’ – the book’s introduction nonetheless acknowledges, and explicitly offers, numerous alternative trajectories. Among these, ‘Spatial Pathways’ emphasizes the value of social scientific methodologies within a global health context: Hannah Bradby’s and Sarah Atkinson’s chapters, for instance, on the migration of medical care resources (staff and organs) and Lucy Burke’s and Rebecca J. Hester’s on the politics and institutionalization of (respectively) ‘care’ and cultural ‘competence’, offer exemplary demonstration of how fine-grained interdisciplinary approaches (comprising history, sociology, human geography, labour and health studies, feminist and literary approaches) are critical to an understanding of the forces which shape health outcomes and policies. ‘Disciplinary pathways’ fulfils the volume’s remit of ‘extending to arts disciplines which have not been so influential to date’, the visual arts in particular. Suzannah Biernoff’s chapter on the ‘cultural scripts for being in pain’ (religious and secular) to which art from past ages gives access, Rachael Allen’s on the artist’s unique engagement with the body in the anatomy lab, and Edward Juler’s on the surrealists’ depiction of viscera as the dark and amorphous centre resisted by the ‘hygienic’ ego, emphasize the role of the visual arts in ‘reconceptualising the body and probing its position and status’ within biological constructs.

For all these second-wave emphases, the most dominant of these pathways across the volume is a rather familiarly ‘Historical’ one (isn’t that also a characteristic emphasis of mainstream medical humanities?), though the offerings themselves are fresh and rich. Corinne Saunders suggests that the literary representation of visionary transport and voice-hearing in medieval texts offers an alternative model to the contemporary diagnosis of psychotic symptom. In relation to the early modern period: Cynthia Klestinec explores the relation of touch and trust in the physician-patient dynamic and its contribution to the historical development of patient compliance; Jennifer Richards and Richard Wistreich recover what has been rendered invisible to modern medicine through the dominance of visual and written information – the primacy of the voice in the transmission of knowledge;  Lauren Kassell considers how digitization of medical records of the period, themselves newly driven by the advent of paper technologies, beg question about the kinds of evidence which constitute medical history. Looking back to the nineteenth century: Heather Tilley and Jan Eric Olsén find a valuable perspective on constructions of disability in pedagogy relating to blind pupils; Peter Garratt contends that the period’s shift away from metaphysical explanations for art to those of embodied psychological aesthetics offers valuable insights for contemporary models of bibliotherapy; Lindsey Andrews and Jonathan M. Metzl argue that nineteenth-century imaging practices help make visible a racial legacy within present-day imaging technologies.

I would add to the editors’ suggested pathways an Activist or Interventionist one, as this characterizes, for example, Lisa Guenther’s searing elucidation of the nexus of political, legal and medical power which legitimizes the barbaric practices of lethal injection for death row prisoners, as well as Bethan Evans’ and Charlotte Cooper’s challenge, via Queer and Disability Theory, both to dominant medicalised accounts of fatness and the tendency hitherto of conventional medical humanities to exclude or neglect activist movements. But I would also stress that ‘first-wave’ or ‘mainstream’ concerns are just as readily traceable. Ethical, for example, is an emphasis which (implicitly or otherwise) runs through William Viney’s study of twin research and the dangers inherent in the idea of ‘natural laboratories’; Luna Dolezal’s  argument that the increasing opportunities for technological enhancement of the human body urgently require a range of humanist perspectives to grasp the physical and existential toll, as well as the satisfactions, of morphological freedom; and David Herman’s contention, in relation to the value of animal companions for people living with autism, that a proper understanding of selfhood as situated within wider webs of creatural life, demands a new kind of ‘interdisciplinary and collective’ story. Experience of illness is at the centre of Jonathan Cole’s and Shaun Gallagher’s fascinating demonstration of neuroscientific and phenomenological  understandings working hand in hand within a clinical setting to de-pathologise chronic conditions and contribute to insights of therapeutic benefit; and, with a more decidedly historical inflection, Ian Sabroe and Phil Withington transpose the Renaissance-humanist conception of ‘counsel’ to modern-day clinical consultation to highlight the value of the emotional space opened by genuine dialogue between doctor and patient.

The really valuable aspect of this book, in fact, is its eclectic inclusiveness – ranging (as Patricia Waugh puts it in her helpful afterword to Part 1) from ‘the performatively paratactic and experimental to scholarly sobriety and sharp socio-cultural critique’ – enabling one to find the contemporary medical humanities one is looking for. This is perhaps the principal reason why some of the terms and concepts used to tie these strands together prove problematic.

‘Critical’, for example, usefully signals the influence upon second-wave medical humanities of twentieth-century post-war critical theory. But the influence of Foucauldian or feminist thinking is, from the evidence of this volume, a scattered and partial one and markedly less visible than the historical scholarship which, as mentioned above, predominates. Critical, in this particular sense, then, does not really hold the new medical humanities together. And, as Martyn Evans forcefully points out in his introduction to Part 3, a progressive critique is visible in the mainstream of medical humanities and traceable back to forebears in medical ethics, philosophy and sociology of medicine: indeed, ‘humanities have been seen as critical in the sense of being vital to medicine since long before medical humanities emerged as a discrete field of study’. Brian Hurwitz and Victoria Bates, on the place and history of narrative in contemporary clinical practice, and the challenges to models of narrative coherence offered by Laura Salisbury’s study of ‘disrupted, disordered’ aphasic speech in relation to the expressive practices of literary modernism and Jill Magi’s, Nev Jones’s and Timothy Kelly’s experimentally ‘cut up’ rendering of psychotic subjectivity, all – in their distinct and partly opposing ways – continue that trajectory. This is valuably the case, too, in relation to Rosemary J. Jolly’s contention that literary narrative ‘has a unique capacity to explore transcultural encounters of radically differing conceptualizations of wellness and disease’ and Anna Harpin’s analysis of the power of Shakespearean tragedy in a high secure setting (Broadmoor) ‘to relocate the patients’ index offences back within the continuum of human experiences’. The texts and contexts have changed or expanded but, as Jo Winning says in another of the overviews which usefully punctuate the Companion, these chapters ‘collectively and forcefully remind,’ as medical humanities has always sought to do, ‘that biomedical discourse is not the only knowledge base’.

While the volume thus witnesses and acknowledges these continuities, what critical medical humanities fundamentally represents nevertheless, the Companion asserts, is a displacement of the ‘common calculus’ within medical humanities whereby the biomedical ‘registers as the cold and deadening engine of facts and hard-nosed pragmatism’ and the humanities as the ‘non-reductive, life-affirming context expert’, where ‘all affect and feeling are to be found’. Thus, the new ‘E’ proposed as replacing Ethics, Education and Experience in critical medical humanities is that of ‘Entanglement’. Originating in science and technology, as Des Fitzgerald and Felicity Callard explain in their polemical chapter at the opening of Part I, the concept rejects the notion of separable units with determinate boundaries (persons, disciplines, ideas) whose telos is integration, in favour of a dynamic of intersection, inseparability, interdependence. ‘We cannot easily divide the practices (or objects) of “science” and “medicine” from the practices (or objects) of social and humanistic inquiry. We do not, as scholars from various disciplines, bring our objects and practices to one another through a kind of free-trade agreement; rather we re-enter a long history of binding, tangling and cutting.’ This thinking has self-evident applicability to the exemplary chapters which immediately succeed it: Annamaria Carusi’s on computational modelling of biological processes (a hybrid of interconnected experiments, equations, simulations) which underscores ‘the continuities between science and art as expressive modalities of meaning which do not merely communicate pre-existent meanings but forge new styles of knowing’; and Volker Scheid’s tracing of the genealogy of holism, a concept less emergent from, than retrospectively ‘accommodated’ to, ancient Chinese thought under mid-twentieth century communism, and subsequently assimilated to a Western systems biology. Entanglement as a conceptual frame for diverse interdisciplinary methodologies also promises, it is true, robust theoretical backing for a discipline which, as Stuart Murray points out, is often unfairly categorized as representing ‘a soft humanities approach’.

Still, there is something unconvincing about the way in which the notion is self-consciously introduced into separate chapters in order intellectually to stitch together these highly individualized offerings. Not only does the effort after conformity to the ‘critical’ line fly in the face of the ever-indeterminate heterogeneity which the concept of entanglement is intended to represent: in its recurrence, the idea begins to seem rather modish, especially when offset by the wealth of historically-oriented chapters which give priority to time-honoured practices and thinking over the latest scholarly fashions. The real paradox, however, is that what is potentially most valuable about entanglement in the context of medical humanities – its engagement with the ‘messy’, the ‘knotted’, its ‘staying with the trouble’ – is still best (or most authentically) demonstrated in this volume by examples of lived experience. So, for instance, when Christoph Rehmann-Sutter and Dana Mahr  show how a bio-medical construct inaccessible to direct experience – the genome – is nonetheless intrinsically part of the experience of those individuals who embody and ‘live’ it; so, too, when Jane Macnaughton and Havi Carel offer a compelling account of breathlessness as engaging cultural, emotional and existential dimensions which while ‘not part of the language of the clinic, are central to the patient’s experience’, thereby powerfully underscoring their contention that bridging this epistemic gap can challenge and broaden the evidence base on which symptomology is addressed clinically. These are exemplary models for what Macnaughton calls ‘a critically engaged “helping” medical humanities’, in which the ‘moral imperative’ is to improve understanding not only in scholarly/disciplinary fields, but also ‘in the clinic’. The primal scene, or the lived illness which it represents, is not so easy to leave behind, nor so necessary or desirable to reject, as the editorial introduction proposes. Indeed, medical humanities without the patient qua patient at its centre, Macnaughton appears to suggest, is in danger of facing an ethical dead end. Fortunately, the evidence of this volume is that second-wave medical humanities still has a strong orientation towards, as Callard and Fitzgerald put it, that ‘most central object of the medical humanities’ – life.

 

 

Related reading – themed issue on Critical Medical Humanities:

http://mh.bmj.com/content/41/1.toc#Criticalmedicalhumanities

 

Book Review: Re-Thinking Autism

9 Jan, 17 | by cquigley

9781849055819

Re-Thinking Autism: Diagnosis, Identity and Equality. Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). London and Philadelphia: Jessica Kingsley Publishers. 2016.

 

Reviewed by Jennifer S. Singh

Assistant Professor of Sociology at Georgia Tech and author of Multiple Autisms: Spectrums of Advocacy and Genomic Science

 

Is any stable and enduring definition of autism possible? Is autism a disruption of what it means to be human? Is it possible to imagine services differently? These are just some of many critical questions addressed in a timely edited book, Re-Thinking Autism: Diagnosis, Identity and Equality. The nineteen authors who contributed to this volume critically engage with “this thing called autism,” in order to disrupt the dominant biomedical model surrounding the diagnosis, treatment, and understanding of autism. The editors describe the volume as a collection of “critical autism studies,” an emerging field concerned with whether the diagnosis of autism is scientifically valid and useful for the lives of people who are labeled with an autism diagnosis, as well as their families and allies. The roots of this approach are cross-disciplinary and draw from a range of perspectives such as critical psychiatry, disability studies, cultural studies, and the social sciences. This three part volume has something for everyone – parents of children with autism, practitioners who provide various of services to people living with autism, and researchers and academics in a range of fields such as psychology, psychiatry, disability studies, cultural studies, or education. The scholars are primarily located in the UK, with a few authors from Canada, Australia, and Brazil. This assemblage of disciplinary perspectives and geographic locations provides important insights into the scope and depth of how researchers are thinking about autism through a critical lens.

The first part of the book grapples with the question: What is autism? It starts with a personal account from Katherine Runswick-Cole, who acknowledges the dilemma of her status as a mother-researcher and the risks of not challenging dominant biomedical frameworks of autism. The focus of her concern, like much of the other authors in this volume, is not about autism itself, but “the systems, attitudes, and environments that disable people with autism” (p. 23). She eloquently argues that “this thing called autism” is a contemporary cultural construct; a narrative that dominates or drowns out all other stories of autism that can be told. The next two chapters focus on the history of the changing definition and diagnosis autism and the wide variation of symptoms that exists in any one person with autism. Sami Timimi and Brian McCabe demonstrate how the biological understanding of autism has not become any clearer since it was first described by Leo Kanner in the 1940’s. These authors suggest that autism spectrum disorder is not a coherent biological construct and lacks conceptual clarity. Richard Hassall critically asserts that there is “no single distinctive psychological or neurodevelopmental disorder represented by the concept of ‘autism’” (p. 49). Hassall challenges us to re-think whether autism is a ‘natural kind’ of disorder, which conceptualizes autism as fundamentally biological deficiencies. This predominant framework reinforces those with the label of autism as essentially different and abnormal. The last chapter in Part 1 is an empirical study of public negotiations surrounding the category of autism in Brazil, including an analysis of the polarization within the Brazilian mental health community of the ontological status of autism (mental disorder or disability) and representations of autism in Brazilian printed media and online social networks. These different lines of analyses demonstrate how autism is no longer exclusively in the domain in medical science and extends to various other public spheres, including parent activists, lawyers, and virtual social networks. These alternative stories disrupt the ontological status of autism as a ‘problematic category.’

Part 2 of the book offers the most interesting critical analyses with a focus on deconstructing autism. It starts with a brilliant chapter by Anne McGuire who offers a critical and nuanced inquiry of the normative and normalizing nature of violence against people with autism promoted by mainstream news and advocacy organizations. McGuire examines the dominant discourse of ‘people living with autism,’ which discursively frames autism as some ‘thing’ separate from the fully living human person. Other chapters in this section also begin to question the framing of autism in the context of what it means to be normal and human. Kim Davies critiques the deficit Theory of Mind model of autism to expose how this ablest framework places autistic people at the ‘edges of the boundary of human being-ness” due to their lack of the very qualities that make us human (p. 133). Dan Goodley also begins to “dissect humanity” through the lens of autism and its relationship with the categorization of the human being. Drawing on post-colonial theory Goodley deconstructs how autism weaves in and out of both the ethnoclass man (embodied in the white, heterosexual, American, able, male) and those engaged in wider human struggle. His conclusion holds a similar sentiment that is thematic throughout this section, “any study of autism must also engage with the simultaneous study of the human” (p. 157).

Part 3: Changing Practice, is the largest section and made up of seven chapters that contend with whether the label of autism adds anything to how various services and practices of autism are experienced from a range of perspectives and disciplinary practices such as education, psychotherapy, psychiatry, or neuroscience. A central theme in this section is that professionals (e.g., educators, therapists, clinicians, or researchers) need to “resist the dehumanizing attacks on personhood that expel children to the margins” (p. 199) and “be committed to the qualities of people, not as autistic, but as human beings in shared moments of time and space” (p. 249). Gail Simon describes this shift in professional practice as having a “reflexive curiosity” about new ways of being with people with autism that opens up opportunities for meaningful and fruitful dialogue (p. 285). As I argue in my own research on the excess funding and research in autism genetics research in the U.S. (Singh, 2016), Simon and other authors highlight how many avenues of research that would be beneficial for people diagnosed with autism are missed or overlooked such as long-term and quality of life issues.

Although this volume brings much needed attention to alternative ways of knowing autism and critiques of the social construction of autism in relation to what it means to be “normal” and “human,” this is not the first attempt to map out a field of “critical autism studies.” Joyce Davidson and Michael Orsini edited a 2013 collection called Worlds of Autism: Across the Spectrum of Neurological Difference. Their conceptualization of critical autism studies is similar to Re-Thinking Autism and is based on an interdisciplinary commitment to “develop analytic frameworks using inclusive and non-reductive methodological and theoretical approaches to study both the nature and culture of autism” (p. 12). It is different in that it focuses more on how power relations shape the field of autism and how narratives of autistic individuals are becoming actors with agency that disrupt assumptions of normalcy and (cognitive) difference. Although power is implicit in many of the chapters in Re-Thinking Autism, the mention of power: who has it, how is it used, and how it affects what we know and understand about autism is less explicit, with a few exceptions. Also, unlike the serious commitment to situated knowledge of autistic people themselves in Worlds of Autism, a commitment to include autistic subjectivities are less apparent in Re-Thinking Autism. Finally, despite the subtitle, Diagnosis, Identity and Equality, there is a limited focus on inequalities that exist in access to early evaluation and services that are apparent based on social class, race and gender. I was surprised of the limited discussion of broader structural inequalities that enable experiences, autism constructs, levels of resistance, and/or cultural and symbolic meaning of autism. These voids are by no means limitations of the volume, but rather speak to the broad scope in which critical autism studies can engage and the need for further analyses on questions this edited volume raises on how we can continue to “re-think autism.”

 

Singh, Jennifer S. Multiple Autisms: Spectrums of Advocacy and Genomic Science. Minneapolis: University of Minnesota Press. 2016.

Davidson, Joyce, & Michael Orsini (Eds.). Worlds of Autism: Across the Spectrum of Neurological Difference. Minneapolis: University of Minnesota Press. 2013.

Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). Re-Thinking Autism: Diagnosis, Identity and Equality. London and Philadelphia: Jessica Kingsley Publishers. 2016.

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